Warning: For those who like to live in the Neurodiverse paradigm that seems to be so popular these days, please don’t bother reading any further. This is our reality with Autism – a reality that is dirty, gritty, painful and often depressing. If you don’t want to feel that way, don’t read this.
We’ve been on quite a roller-coaster ride. BuddyBoy had severe stomach pain from his medication and basically tore into his own skin with his teeth and nails. He would have a one to three hour episode, followed by 5-10 minutes of relative quiet, before starting all over again. It was very ugly for a while, and we were ready to have him (and possibly us) committed to a psychiatric institution. If any Child Services worker had come into our house during that time, I was sure they would have sent us to jail and taken all the children off us, as he looked like a battered child. I ended up trying to take videos of his behaviour to safeguard ourselves, and thankfully the support workers could see it with their own eyes, so at least we had some witnesses!
Unfortunately, when you have a child who has extremely basic communication, he can’t tell you that he’s hurting. So it took us a while to figure out it was his stomach hurting, not just another phase of his already erratic behaviour. Once we pulled him off that medication, his pain subsided (as did his reflux), but he was still not sleeping. The medication that was supposed to help him be calm and sleep better, was giving him headaches, and sending him into a manic phase, so we had to pull that one, too.
Manic for BuddyBoy means he would spend hours just running from one wall to another, squealing very loudly and in a high pitch. Hubby and I have gone partially deaf because of it. He would be awake from 25 to 30 hours at a stretch, before falling asleep for another 16 hours. Yes, we are totally exhausted. Once the manic phase wears off, we hit the down phase. He will sleep for 10 to 12 hours, and is grumpy the rest of the day. He does not want to interact with anyone, he won’t tolerate support workers anywhere near him, and often won’t tolerate us either. He is no longer speaking, is not playing with any toys, not interacting with anyone, and we’ve given up trying to do therapy as there’s no point. He’s also stopped using the toilet since pulling him off his SSRI. As he’s not been wearing any clothes for months, and he usually doesn’t like wearing nappies, this means I’m cleaning up wee off his bed and the floor several times a day. We live with the constant smell of a public urinal, no matter how often I clean.
It doesn’t help that his anxiety (increased since coming off the meds) means that he’s refusing to have a bath. His hair is oily and dirty, and he stinks of wee, apart from those rare times when he lets us wipe him down with a facewasher. The only thing he will do these days is watch YouTube on his iPad, or DVDs. If we take those away (which we often have to) then he spends his time bouncing from wall to wall, or body slamming himself into his mattress.
We have started again with footbaths, as we were taking a break for a while on the advice of our homeopath. However, due to the medications and his homeopathic remedies, his liver was having to work very hard, and not using the footbath resulted in a huge overload for his liver. So we’re back on them again, and he’s very happy to have them (the only bath he’ll tolerate). Interestingly enough, the last two footbaths we’ve done (two days apart), he’s developed a pus filled pimple on his knee, and also on his foot. They came up within a couple of hours, went down over the next day, then came up again with the next footbath, so it’s definitely footbath related. Toxins that his body could not tolerate, coming out in the form of pimples. We had also been doing some homeopathic aluminium clearing, and this caused a scabby sore to come up on his face after every dose.
Now we’re at an impasse. If we do nothing, we have a child who does not communicate, does not interact with anyone, ranges from manic to depressive, will not allow basic personal hygiene, breaks things on a daily basis, and needs one on one for up to 30 hours at a time. If we treat him with medications, he becomes worse. Treating him with supplements or homeopathic remedies at best gives us small improvements, and at worst makes him worse.
This would be hard enough if he was an only child. Unfortunately, he’s not, and he has several siblings who have high needs themselves, and who have been missing out on a lot of things over the last six years. I know some parents say that if you have a child with special needs then the other children will miss out, and while it’s not fair, it will help them grow into caring people. What if the other children have special needs themselves though, and really don’t appreciate the fact that their entire lives have to revolve around their younger sibling? What if their needs are simply not being met because all your resources go into that one child that has such high needs?
We have spent six years trying to help BuddyBoy overcome his health issues, learn to communicate, become a part of our family and to find some joy in life. Instead, we have a child who has progressed very little during those six years, has stretched our resources to the breaking point and beyond, and we are in a permanent state of high stress and anxiety.
The difference it makes to us when BuddyBoy is asleep during the day is incredible. We don’t have to listen to constant yelling and high pitched screaming, or even worse – dreaded silence. We’re not on the alert for cleaning up poo or wee or food or shredded paper. We’re not having to constantly be within hearing and preferably viewing distance to make sure he’s not breaking yet another laptop or sticking his finger up his bottom or smashing his iPad screen yet again. One of us can actually go shopping while the other one is at home working on something – instead of one of us sitting in close proximity to BuddyBoy while the other rushes through work while monitoring the level and pitch of screaming. We are seriously at the point where the thought of sending BuddyBoy to live elsewhere is no longer a ridiculous thought, but rather becoming an imminent necessity.
As I get ready to publish this (and it’s taken me nearly all day to write it), BuddyBoy loses it again. He’s watching a YouTube clip – one he’s seen many times before. But this time, he doesn’t like it. So he hits his iPad with his fist, closes the app, opens it again and plays the same clip. Repeatedly. He works himself into such a frenzy that he finally loses control and does hard body-slams into his mattress, while biting his wrist hard enough to draw blood. Just a regular day in our household.
Hi, you’ve been on my heart particularly the last couple of weeks, and just wanted to let you know that I’m thinking of and praying for you so much, your battles at the moment in so many areas are huge and something that I can’t even imagine living every day…. Praying God keeps you strong and gives you the grace that you need every moment! I suppose lots of people have said that to you, but I’m not just being polite, I am and will be praying and pleading with God every day on the behalf of you and your family, and particularly little BuddyBoy. God bless you!!!